Jump to content

  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Help!

djsweis

Recommended Posts

djsweis Newbie
djsweis
Posted

I am not sure how to post a new post so I am adding on to this one.  I tested positive with high risk on genetic testing.  I was told by GI doctor that this means nothing, only that I have a higher chance of getting celiac than him.  I have Hashimoto disease and tested positive on ANA testing also.  I have had stomach issues all my life and I am now 50.  Went gluten free 2 years ago.  Went in for my 50 year old colonscopy so decided to test for Celiac.  I had only eaten gluten for 1 week prior to the test.   GI doc stated that no celiac, that I had Duodenal Erosion and most likely from over use of aspirin or ibuprofen.  (I don't use either)  Endoscopy stated histologically unremarkable duodenal muscoa and peptic duodenitis.   I am hoping no Celiac, but with stomach issues, high risk genetic test, duodenal erosion and hashimoto disease I am worried that something was missed or that I did not have enough damage being off of gluten for 2 years and only on it for 1 week prior to test.  Any opinions or ideas?  Thank you

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I am not sure how to post a new post so I am adding on to this one.  I tested positive with high risk on genetic testing.  I was told by GI doctor that this means nothing, only that I have a higher chance of getting celiac than him.  I have Hashimoto disease and tested positive on ANA testing also.  I have had stomach issues all my life and I am now 50.  Went gluten free 2 years ago.  Went in for my 50 year old colonscopy so decided to test for Celiac.  I had only eaten gluten for 1 week prior to the test.   GI doc stated that no celiac, that I had Duodenal Erosion and most likely from over use of aspirin or ibuprofen.  (I don't use either)  Endoscopy stated histologically unremarkable duodenal muscoa and peptic duodenitis.   I am hoping no Celiac, but with stomach issues, high risk genetic test, duodenal erosion and hashimoto disease I am worried that something was missed or that I did not have enough damage being off of gluten for 2 years and only on it for 1 week prior to test.  Any opinions or ideas?  Thank you

If you were gluten-free for 2 years, Celiac testing means nothing. 1 week on gluten is likely not enough to show the damage needed to show up on a biopsy.

GFinDC Veteran
GFinDC
Posted

Hi Djsweis,

 

You can start a new thread by clicking the blue "start a new topic" button above the green bar right side.

 

Yep, celiac testing is no use if you haven't been eating gluten for a while.  The usual requirement is to eat gluten for 8 to 12 weeks prior to testing.  Hashimoto's Thyroiditis is more common in celiacs than other people.  Celiac and Hashimoto's are both auto-immune conditions.

kareng Grand Master
kareng
Posted

Hi Djsweis,

 

You can start a new thread by clicking the blue "start a new topic" button above the green bar right side.

 

I split this post into his/ her post into a separate topic.

GFinDC Veteran
GFinDC
Posted

I split this post into his/ her post into a separate topic.

 

That's just what u dew, ain't it Crayon?  U 'ol post splitter u!  Good job!  :)

 

 

Sorry for the off topic DJWeis.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi DJ -

 

The doctor was correct in his assessment of the genetic tests - it is estimated that about 30% or so of the population has the genes that predispose them to Celiac but only about 1% actually get it.  If you don't have the genes, you cannot get Celiac - but having the genes does not guarantee you that you WILL get it.  Also, even if you don't have the genes, you can still get non-Celiac gluten intolerance or be gluten sensitive.

 

After being gluten-free for 2 years, as others have said, the tests are useless.  However, did your stomach issues clear up?  Did your symptoms come back once you started eating gluten again?  That would be a strong indicator regardless of the outcome of the tests.

kareng Grand Master
kareng
Posted

That's just what u dew, ain't it Crayon?  U 'ol post splitter u!  Good job!  :)

 

 

Sorry for the off topic DJWeis.

That's me! Built of steel and made to last! :)
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


djsweis Newbie
djsweis
Posted
  • Author

Yes all issues have come back.  Fatigue, rapid heart, palpitations and the constant stomach aches.  Aches and pains every where.  It took a few days and now I am still paying for it.  The first couple of days I felt fine, then by the time I was having my procedure approx. 8 days on gluten I hit the wall.  I had the procedure on 12/19 and today I am still feeling horrible.   Trying to get back on track, hoping I will start to feel better soon. :)

GFinDC Veteran
GFinDC
Posted

Hi DJ,

 

Many of the members here are not officially diagnosed celiac.  But we do know how our bodies react to eating gluten.  If it hurts don't eat it is simple way to think about it.  A dr's opinion can't change how our bodies react, and there is no cure for celiac disease at the moment.  So there is limited value to a formal diagnosis IMHO.  But each person has to decide for themselves if a diagnosis is important to them, or needed.

 

@ Crayon, yep, I figured that! :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      359

      Terrible Neurological Symptoms

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes...
    2. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      359

      Terrible Neurological Symptoms

      I had MRI scan a few years ago showing everything normal, and now it's no longer triggering the nerve pain when I bow my head today - it only seemed to happen yesterday, and that was the only time it happened! Just seemed weird as no movement has caused my usual nerve pain before. It's normally just random.
    3. akebog
      - akebog posted a topic in Gluten-Free Restaurants
      0

      Fusilli Pizzeria, Miller Place, NY

      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious...
    4. nancydrewandtheceliacclue
      - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      12

      Celiac flare years after diagnosis

      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future.
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      12

      Celiac flare years after diagnosis

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,062
    • Most Online (within 30 mins)
      10,442
    AutomatedGlutenEjector
    Newest Member
    AutomatedGlutenEjector
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      I had MRI scan a few years ago showing everything normal, and now it's no longer triggering the nerve pain when I bow my head today - it only seemed to happen yesterday, and that was the only time it happened! Just seemed weird as no movement has caused my usual nerve pain before. It's normally just random.
    • akebog
      Fusilli Pizzeria, Miller Place, NY

      By akebog · Posted

      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
×
×
  • Create New...